Five weeks ago I left hospital after undergoing an open partial nephrectomy to remove a suspicious 3cm tumour from my right kidney. The experience was not as bad as I anticipated. Hospital itself was made bearable by an internet connection, and the tweets, chats and emails from well-wishers (thank you all – it makes a huge difference!). After three nights I was back home. After a week I was off pain-killers. After three weeks I found myself bounding up stairs two-at-a-time again — and now … I am almost back to normal, with only an occasional twinge to remind me of my wound.

Today I returned to Addenbrooke’s to discover the results of the histopathological analysis that had been performed on the tissue removed from my body. The findings were:

As suspected, the tumour was cancerous. The cancer is Renal Cell Carcinoma without any complicating sub-types. This is the most common type of kidney cancer.

The tumour is categorized as Stage 1 (on a scale of 1 – 4) – that is, small and completely contained within the kidney.

There is no evidence of spread to surrounding tissue.

The tumour’s Grade is II (on a scale of I – IV); where I is the least aggressive, and IV the most aggressive, cancer.

“How long have I got?”

I was slightly annoyed in the the run-up to my operation by a publicity exercise from Macmillan Cancer Support, whose publication of updated figures for median cancer survial times was accompanied by a widely-reported sound-bite from their chief executive:

“Finally we can answer the big question: ‘How long have I got?’”

Well, no. We can’t answer that question as everybody’s situation is distinct. If our lives were governed by probabilities I would not have cancer in the first place! A more scientific (and, maybe, more optimistic) approach to making sense of cancer statistics comes in Stephen Jay Gould’s excellent essayThe Median Isn’t the Message. In my particular circumstances however the outlook is good: Cancer Research UK reports that for Stage 1 cases such as mine:

[w]ith a less aggressive cancer (grade 1 or 2 kidney cancer) about 94 out of every 100 people (94%) diagnosed live for at least 5 years after diagnosis.

So, especially given that the sample for these figures will contain a large proportion of elderly people, I will cheerfully take those odds.

Watchful waiting

So life returns, if not to normal, then at least to some semblance of it. My next medical appointment is a follow-up CT Scan in three months to check the result of the surgery and state of my organs. All being well, the follow-up regime may revert to a yearly ultrasound scan – since I am “young” it would be unwise to accumulate a large radiation dose from repeated CT scans for the rest of my life, which (I am told) I can now reasonably expect to last a long time …

And so, unexpectedly swiftly, I find I am to present myself at Addenbrooke's at 07:00 this Saturday to be admitted for an open partial nephtectomy (following the recent diagnosis of suspected kidney cancer).

Laparoscopic vs open surgery

I have avoided hospital all my life so far, so the sudden prospect of major surgery is a little daunting. I discussed various surgical options with my consultant – I was attracted by the idea of laparoscopic surgery, but perhaps only because my inner geek was interested in having a robot involved in the procedure (the hospital has a da Vinci Surgical System). The chief advantage of the laparoscopic approach is that it is less invasive and therefore tends to have a shorter recovery time – and exhibiting perhaps a dry sense of humour the consultant observed I was probably “keen to get back to the gym”.

However, in my sort of case the Cambridge team tends to favour open surgery. This is in part because they can dump ice into my body cavity during the operation, so that the (cooled) kidney remainder dies a little less as a result of the necessary ischemia, but also because of the “endophytic cyst” that has been found in the centre of the kidney. Ah yes, that cyst. The doctors seems sure this is nothing to worry about, since many people develop simple (fluid-filled) renal cysts at some time. However just to be sure the surgical team will perform an ultrasound scan on my exposed kidney to confirm whether this cyst really is as simple as it appears, and if not – cut it out. Given that I am learning that doctors are practised in the art of gradual disclosure, I feel a little nervous about this.

Radical vs partial

There was also the question of whether to have the whole kidney removed (radical nephrectomy), or just the diseased part. The thinking here is that for smaller tumours (such as mine) it is better to preserve some kidney, and so some kidney function, where possible. This is not so much based on direct clinical evidence – since one kidney always takes-over so over effectively when the other is removed this would be hard to measure – but on logic: if something else goes wrong with the remaining kidney later, it is surely better to have preserved whatever one can.

Retail therapy

Faced with various discomforts ahead, I decided I needed to treat myself to some compensatory camera equipment, and plumped for a second-hand Nikon D700. This is a camera that Nikon is about to discontinue, but has many points in its favour:

It’s now been around long enough (since 2008) that second-hand ones are available at reasonable prices.

It’s a “full-frame” camera, with all the attendant benefits that brings – particularly in ultra-wide lens choice, which intereste me.

I suppose it was during the ultrasound scan that I first realised something was really up. Here I was, having my bladder and kidneys scanned, as a result of two years, on and off, of what we Brits might term “waterworks problems”. We were chatting away (“Good drainage! — yes that looks fine” … small-talk like that) when the scanner reached my right kidney.

“Everything okay?” I enquire.

“Let me finish and then we can discuss it,” the sonographer replies. The tone had changed.

Now, I say this was my first realisation that something was wrong, but it’s not quite as simple as that. As a mild hypochondriac I often live with the strange internal doublethink of believing that every ache or pain betokens some dreadful illness, while simultaneously knowing that that’s silly and that I'm fine really. Now the balance had changed: the dark fears had become the reality; the self-reassurance the self-deception.

“Maybe some kind of cyst – it’s worth having it checked out. I’ll put something in a note to your GP.”

And so she did, as I find out on getting the ”I'm so sorry” call from my GP with the (not very meaningful) news that the scan had found a 27mm heterogeneous vascular lesion on my right kidney, and the (rather more meaningful) news that as a consequence I was being urgently referred to Addenbrooke’s with suspected cancer of the kidney.

More scans

“This is the worst bit,” said the consultant, “the waiting around not knowing.”

I doubted this: an early and painful death was potentially the worst bit I thought. In any case, it seems that in the World of Cancer “not knowing” is a constant. Or at least not knowing everything. You don’t how well you'll respond to various treatments, you don’t know what’s happening internally between scans, you don’t know what the limited resolving power of the of scanners can’t reveal. An ultrasound scan, it turns out, doesn’t give a very precise image of the organs, so I was now to have a CT scan during which a contrast agent would be injected into my body so that my organs “lit up” in the images produced.

Meanwhile, I’d been able to gather information about kidney cancer from the Web. In particular it seemed that:

The kind of sizes being talked about for my “mass” meant it was small in kidney cancer terms. In some cases the tumours grow football-sized before detection.

Kidney cancer doesn’t respond to the usual radiation-based treatments used for many other cancers. It is treated by surgery and (recently) by new immunotherapy drugs which can sometimes be successful in stimulating the immune system into attacking the cancer.

If a kidney has to be removed, people can usually get by fine with just one.

Quoth the server, 404

In addition to factual information available on the Web there is a range of forums and mailing lists dealing with kidney cancer, from furrow-browed ones detailing experiences and reviewing the latest research, to softer ones offering more purely emotional support (“I’ll pray for you on your cancer journey”). Needless to say I prefer the former. There are also lists of kidney cancer blogs (of which I suppose this is now one) which range from the reassuring (“I had kidney cancer n years ago and following surgery have had no recurrence”) to the embattled (“we were very disappointed to learn the scan showed there were now nodules on the lungs”) to the despairing, where a distraught spouse takes over to leave grief-stricken postings following the first blogger’s death. And there are those blogs which just get you a 404 – which could be good or bad …

So at yesterday’s meeting to review the CT scan result I already felt reasonably well-prepared for what might transpire and what the options might be. The key points were that:

The CT scan confirms a 3.3cm × 2.5cm mass on the lower pole of my right kidney. Its removal is recommended as it is highly likely to be cancerous.

The chances of any cancer having spread, given the size of the tumour, are very low. Removal of the tumour should effect a complete cure.

Other organs (in the thorax, pelvis & abdomen) were surveyed in the CT scan imagery: nothing was found. My left kidney is “pristine”.

The recommended procedure is an open partial nephrectomy, to happen just before or just after Xmas. This will probably entail 3-6 days in hospital and some weeks of recovery at home; no driving for 6 weeks.

So this is where I am. A fuller picture will emerge when the pathology is known for whatever is removed – but for now, the plan is that after some fairly hefty surgery I can expect the disease to be gone. Or, even better, that the slim chance comes good that the tumour is not cancerous – for as Woody Allen has observed, the most beautiful words in the English language are not “I love you” but “It's benign.”

Quotable

Note that everyone directly involved in the development of ISO standards is a volunteer or funded by outside sponsors. The editors, technical experts, etc., get none of this money. Of course, we must also consider the considerable expense of maintaining offices and executive staff in Geneva. Individual National Bodies are also permitted to sell ISO standards and this money is used to fund their own national standards activities, e.g., pay for offices and executive staff in their capital. But none of this money seems to flow down to the people who makes the standards.